I choose to be optimistic, even though I have ALS

I choose to be optimistic, even though I have ALS

One day, about four years after my diagnosis of ALS, I began having trouble pronouncing words. My tongue felt thick and couldn’t form words at the speed I was thinking them. My speech came out garbled and my brain hurt from trying to overcome the disconnect. At the time,…

EMA’s CHMP upholds its negative opinion on masitinib for ALS

An advisory committee from the European Medicines Agency (EMA) has upheld its opinion against granting conditional marketing authorization to AB Science’s masitinib as an oral add-on treatment for amyotrophic lateral sclerosis (ALS) in the European Union. The decision was taken in a meeting by the Committee for Medicinal…

ALS and the heavy burden of grief

It was six years ago last week that my late husband, Jeff, and I sat in a neurologist’s office in Maryland as the doctor said, “I believe that this is ALS.” Moments before, I’d been watching the doctor administer a second electromyography (EMG) on Jeff, who found the procedure…

Initiative to use AI technologies to improve communication in ALS

The Scott-Morgan Foundation (SMF), a nonprofit that’s pioneering assistive technology innovation, will lead a new initiative using artificial intelligence (AI) technologies to help people with diseases like amyotrophic lateral sclerosis (ALS) to better communicate and maintain their sense of identity. “We live in a world where millions are…

Texas Children’s investigator wins $2.4M grant for ALS research

A Texas Children’s Hospital investigator has received a $2.4 million grant for a study that seeks to understand whether mechanisms used by bacteria to hide from the immune system can be explored to ease inflammation in amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases. Steven Boeynaems, PhD, an investigator…

NeuroSense moving to request early approval of PrimeC in Canada

NeuroSense Therapeutics has initiated the process of applying to Canada’s regulators for early marketing approval of PrimeC in treating amyotrophic lateral sclerosis (ALS), based on positive findings in a Phase 2b clinical trial. The application will be filed under Health Canada’s Notice of Compliance with Conditions policy, which could…